New Horizons is a nonprofit newsletter published twice a year by and for ventilator users, their families and those that care for them. Articles and comments are welcome. New Horizons is not and has never been associated with any other newsletter, product, or company.
Like millions of families across the United States, the Knights find themselves in the middle of what many experts say is a fundamental shift in health care: Families are performing an unprecedented amount of technical medical care in their homes, much of which would once have been provided by doctors or nurses alone.
Technology has provided us to live longer, productive lives but the shift toward family members providing medical care inflicts a different set of responsibilities. Ms. Knight lists her own troubles: a shortage of money and sleep, worry over endlessly beeping equipment, battles with insurance companies and a marriage that, she says flatly, has been worn to the brink of divorce.
In this age of managed care, the intense pressure to reduce health-care costs has reduced the number of people admitted to hospitals and shortened hospital stays, which means more care is being administered by family members who are unpaid and, in many cases, untrained and unprepared for what is newly expected of them.
Carol Levine knows all to well the bureaucracy she has had to deal with . In January 1990, she and her husband, Howard, then 61, were in a car accident that left him paralyzed and with severe brain damage. As she worked to reconstruct their lives, she became overwhelmed by practicalities, from ordering supplies -which often involved battles with bureaucracy - to finding a new apartment and renovating it to accommodate a wheelchair. She also struggled from her transition of wife to home nurse, with little help from doctors, insurance companies or the government.
The push for community-based services is the direct and logical outgrowth of a disability rights movement that has taken off in the last 20 years. More and more people with severe disabilities are living in their own homes in the community. According to the research of the World Institute on Disability, W.I.D., almost eight million Americans need assistance from another person to accomplish every day tasks, and three million of them are not getting the assistance they need. Indeed, in my own personal experiences, I have relied on attendants and home health care agencies over the last 15 years to provide me with the assistance I need daily to keep my life going as independently as possible. In the last two years I have seen a gradual decline in adequate skilled nursing care being provided in the home as nurses no longer want to do "high-tech " old fashioned bedside nursing that involves total care for those of us who are quads and or trach/vent dependent. In the last ten months I have had to change home health agencies twice because of lack of available staff that are quote "not qualified" to work a vent case. Another factor also is the fact that many home health agencies will not accept a case that is funded through Medicaid. This is discrimination at the highest level. All of us deserve the right to care in our own home no matter what the funding source is.
Attendant services (also known as personal care assistance) are among the community-based services most critical to the independence of people with disabilities. Some states will allow a PCA to care for someone on a vent others will not. Beside changing government regulations, we need to look for ways to allow more consumer control of services, to make service provision less medically oriented, to build more flexibility into how, where and by whom services are provided to better address the needs of the disabled community to ensure consistency of service.
Janet Prebul is president of the Las Vegas chapter. Janet has Arthogryposis a condition that affects the nerve supply to the muscles. Janet has limited movement in her arms and legs. She has difficulty being in a sitting position and uses a standing electric wheelchair. She has a tracheostomy and uses a positive pressure ventilator with a Bear 2 and LP6 vents as back ups. She has 7 free hours of ventilator free time during the day and uses oxygen during her free time. Her trach is plugged with a trach button. She has been hospitalized numerous times with pneumonia and has been using a vent since she was 12. Now 25 yeras old,, Janet moved from Cleavland, Ohio to Las Vegas, Nevada in 1996. She soon discovered a lack of available support groups. It was then she decided to start her own NAVDI chapter in Las Vegas. She met with respiratory therapists to discuss her ideas. Her prospects of starting her own group soon blosomed with the help of Desert Lane Care Center and the support of the RRT there.
Meetings are now held on the 3rd Thursday of every month at 2 PM at Desert Lane Care Center 660 Desert Lane, Las Vegas, Nevada. For more information call Sandy Martinez at 702-382-5580.
Then one blustery March, I was asked to review grants in Washington D.C. for the U.S. Department of Education. Our plane got caught in a terrible unexpected blizzard that literally closed down our nation's capital. As if that wasn't bad enough, somehow our luggage didn't make it off the plane, and our suitcases traveled all the way to Frankfort, Germany.
Last summer we decided to take our daughter Tara to a disability conference in Anaheim, California, right in the back yard of Disney Land. We caught a red eye flight, and the three of us were all cranky and exhausted when we finally reached our destination.
Although our hotel reservations had been made and confirmed months ahead of our arrival, we were shocked by our hotel room. The hotel clerk informed us that our room had been upgraded. The cost was a mere $650 per night. I nearly fainted on the spot. Laughing, the hotel clerk assured me we would be charged the conference rate. We walked into the massive hotel suite. The lights of the Magic Kingdom blazed through the floor to ceiling windows. The dining room table was ornate, the closets were gigantic, the bar was impressive and the suite actually had everything but beds. And all we wanted was to rest our weary bones on a soft bed with blankets and pillows.
We switched to a regular hotel room as soon as one became available. The conference proceeded smoothly but returning to Indianapolis was another story. The three of us arrived promptly at LAX Airport and found that our flight had been canceled. All the other passengers had been notified two days prior to depature. The airline booked us on a plane bound for Chicago's Midway Airport where we were to catch a connecting flight to Indy. On the flight from Chicago to Indianapolis, the flight personnel violated the Air Carrier Access Act by taking away my ventilator which I use to help me breathe. I always store the ventilator under the seat by my feet. My husband and I were adamant that they could not take my assistive device, but the flight personel would not listen. Then, the airline lost our lugguge. Oh, not this routine again.
I wrote a complaint letter to the airline, and they responded by giving us three round-trip tickets to anywhere they travel to in the United States.
Luckily, most of my friends with disabilities have an easier time traveling than I do. Maybe I'm just a jinx. In any event, there are many resources that can make traveling with a disability an enjoyable and, yes, even adventuresome experience. These sources can be of help in finding out information.
Paralyzed Veterans of America.
801 18th Street, NW Washington, D.C. 20006
International Association for Medical Assistance to Travelers.
417 Center Street
Lewiston, NY 1409
Whole Person Tours
P.O. Box 1084
Bayonne, NJ 07002-1084
60 Massachusetts Avenue, NE
W ashigton, D.C. 20002
(800) USA-RAIL. (voice) or (800) 523-6590 (TTY)
Valerie Brew-Parrish is a polio survivor and a vent user.
Pacific Belll's free booklet, "It Doesn't Have To Be Difficult", describes their services for deaf and disabled consumers. You can order this booklet or get further information by calling 1 (800)772-3140 (Voice/TTY) or writing them at 2150 Shattuck Avenue-Suite 200, Berkeley, CA 94704.
The last page of the booklet consists of a "certification" which must be filled out and signed by a CA licensed physician, Department of Rehabilitation counselor or an audiologist before the adaptive equipment can be loaned.
Available equipment for loan are:
Visual Impairments: Big button telephones; large number overlay to use on a standard phone.
Hearing impairments: A "loud ringer", which is a visible signal that flashes when the phone rings; an ampliifier which enhances the caller's voice and TTY's (Telecommunications Devices for the deaf).
Mobility Impairments: Speaker phones; big button phones; cord free phones.
GTE at 1 (800) 821-2528 (Voice/TTY) and other local phone companies at 1(800) 924-9599 (Voice/TTY) will also loan comparable adaptive phone equipment.
Their brochures also discuss operator assistance, TTY toll discounts and the CA Relay Service.
The free loan of this telecommunications equipment to certified individuals with disabilities is funded by a small surcharge that appears on all phone bills.
TOPICS WILL INCLUDE:
The AMA's Patient Advocacy Team is collecting these stories and is asking for voluntary health agencies to publish notices in their newsletters asking members to contact the team. Contact:
American Medical Association
Patient Advocacy Team
515 North State Street
Chicago, Ill. 60610
NEW HORIZONS STAFF
Copyright 1998 Paula M. Howaniec